Anyone have granulomatosis with polyangiitis (GPA) or Wegener's?

@purehope2022 You may see the photo as an unflattering picture of you, but the rest of us see a healthy, happy woman!!! Please stay around, others NEED your positive outlook!

I am now 6 weeks post-op with newly constructed eardrum. My first hearing test was not encouraging. A drop in both high end and low end sounds with reconstruction--I heard better with the hole. 'However, having a hole in my eardrum meant that with every shower, hair wash, swim, etc. I had to make a water-proof plug with a cotton ball and vaseline, so that it couldn't get into my ear canal. I can't believe how much easier life is without having to think and about and do that. I'll have a re-test in 6 months to see if anything has improved. With my hearing loss now in the "moderate" range, I will be a candidate for a hearing aid. Still hoping for the best. Time will tell.

@purehope2022, did your surgeon say anything about an adjustment period to "relearn" hearing with the newly constructed eardrum? I'm not well-versed in this, but I wonder if @julie04 may have some thoughts.

Thanks for asking. We will do a re-check in 6 months. Dr. Breen didn't suggest a "re-learnng." I have been using my earphones with just that ear to 'force it' to hear 😉 That is completely my idea, there is no medical science or advice behind it, only pure hope <3

Anyone out there dealing with granulamatosis polyangiitis with vasculitis? With organ involvement?

Hi, my rheumatologist suspects that I now have GPA and my heart and kidneys are the organs involved.
I'm expecting a call tomorrow from another rheumatologist that specializes in GPA, and will be undergoing a biopsy soon to confirm dx.

Hello, Sheims 022.
I have GPA and my Heart and Kidneys are the organs involved, altho I have a healthy heart and a healthy lungs,
its the veins leading to the heart and lungs that that are damaged due to vasculitis, I also have chronic Kidney disease due to the Vasculitis and drink quite a bit of water every day, at first I started drinking about 60 oz of liquid a day and now I drink about 32 oz a day. I am starting my 11th year with GPA and in remission. I wish there were more Rheumontologist out there, right now my Primary doctor is watching over me.
I can answer any questions you ask, I take two "preventive" heart pills and take no medication for my kidneys and none for my lungs, when I was first diagnosis I took Prednisone. Write using the words ''GPA'' MFB

Since 3 years i have been diagnosed with Wegener desease it make me ill i had Ritumax and they had to stop half way because my body did not accept the whole drug.. i am 40 years old 😢❤️

holland13, nearly all patients can be desensitized to Rituximab. https://hemonc.org/wiki/Rituximab_(Rituxan)_desensitization_protocol
Maybe the only nice thing about Wegener Disease is that people can go into remission. Well, and with treatment it won't shorten your life.
I hope you can get some good medical care.

@holland13 Welcome to Mayo Clinic Connect! I’m glad you found us. I, also, had a problem with Rituximab the first time I got it. I was monitored for a while in the infusion center and then they sent me to the ER. No long term affects, but I was taken off the drug. A few years went by and I kept telling the doctors that Rituxan helped me so much that I had to try again. So, I tried again with a more dilute solution and Benadryl prior. The infusion usually takes 1 hour, but, for me, it takes almost 3 hours. I feel fine after! Talk to your doctor and try again! Suggest that you do the desensitization protocol as in the wonderful article which @gently sent.
And try to relax! Have a good book or some music with you!
Will you talk to your doctor? I know you can do it!!